Challenging the Language in HIV Advocacy: A Call for Consistency

In the world of HIV advocacy, language is powerful. As an advocate, I have often found myself in spaces where we are united in our mission to end stigma around HIV. But lately, I've heard unsettling phrases like, "I live with HIV, not herpes" or "At least it's not herpes." While this language may not target HIV, it still creates stigma by implying that herpes is somehow worse.

This subtle judgment creates an unintended hierarchy of health conditions, alienating those who navigate both HIV and herpes or other co-occurring conditions, like myself. If we are committed to destigmatizing language around HIV, we must extend that compassion to all health conditions.

Recognizing the intersections of health conditions

Living with HIV often means managing other health challenges, including sexually transmitted infections/diseases (STIs/STDs), like herpes.

For those living with both, comments that stigmatize herpes are a painful reminder that judgment persists within advocacy spaces. People facing mental health challenges, substance use issues, or housing instability may also experience these stigmas, highlighting that HIV rarely exists in isolation.

Addressing stigma effectively means recognizing these intersections rather than isolating HIV as the only condition deserving of empathy.

Why stigmatizing language persists in HIV advocacy

If advocates know the harm of stigmatizing language, why do phrases like "at least it's not herpes" persist? Often, it is due to limited awareness of how this language affects others.

HIV advocacy has evolved, making it clear that people can live fulfilling lives with HIV. Unfortunately, the same understanding hasn;t reached conditions like herpes, leading some to unintentionally create a "better or worse" narrative around health conditions.

This separation creates an inconsistent story where HIV is normalized while other conditions remain stigmatized.

The importance of person-centered language across the board

Person-centered language is about seeing the individual first, the condition second. Saying "a person living with HIV" instead of "an HIV-positive person" prioritizes the person, not the condition.

This practice is essential not only for HIV but for every health condition. By extending this approach to herpes, mental health issues, and substance use, we create a culture where every person is valued, regardless of their health status. It is not enough to use person-centered language solely for HIV; we need to uphold this standard in all health-related conversations.

Moving toward inclusive, non-stigmatizing language

What does truly inclusive language look like? It means recognizing that everyone has a unique medical journey, and no condition warrants more judgment than another. Here are some ways we can move forward:

1. Listen and reflect: Before comparing one condition to another, consider how it might impact those navigating both conditions. If you wouldn't say, "At least it's not HIV," rethink statements like, "At least it's not herpes."
2. Educate and advocate broadly: HIV advocates can take the time to learn about conditions that often co-occur with HIV, like herpes. Understanding these conditions helps us speak about them with compassion and respect.
3. Foster empathy-based conversations: Encourage conversations about how language affects people living with various health conditions. Help others reflect on the weight of their words.
4. Normalize person-centered language: Commit to using person-centered language for all health conditions, not just HIV. This standard promotes a more respectful and inclusive advocacy environment.
5. Challenge stigmatizing language: If you hear others using stigmatizing language, gently address it. People are often unaware of their impact until it's brought to their attention.

A Call for Unity in Health Advocacy

Advocacy is about unity, understanding, and respect. The more we move toward person-centered language, the stronger our community becomes. HIV is only one aspect of many people's journeys, and other health conditions deserve the same empathy.

By destigmatizing all health conditions, we are building a space where people can live openly, without fear of judgment regardless of what they are managing. In our advocacy work, let's ensure our words are as inclusive as our mission.

True progress in destigmatization requires compassion across all intersections of health, because no one should feel left behind. We must remember, as Malcom X once said, "When I is replaced by we, illness becomes wellness."